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Friday, December 31, 2010

New Years Eve

We got almost no sleep last night. Little Miss did not sleep, so neither did we. Unfortunately, neither did the 7-year-old that shares our room now...we heard him complaining to his mom this morning! "She cried all night and now she just cries all day! This is the worst!" Sorry, buddy.

It's 1:00pm here, and Scarlett has already had a busy morning. A bunch of doctors checked in to give us a rundown of the next few days. They inserted a naso-gastric tube through her nose into her stomach for additional feeding. Chris and I resisted this as long as possible to be sure it was absolutely necessary, but she is not gaining weight fast enough, so down it went. Now, she will receive about half her nutrition by the tube; she can still nurse and take bottles, too.

The neurosurgery team has already referred her for evaluation by many other services. An ophthalmologist and physical therapist have already been in, and occupational therapy is scheduled. So far, no one is noticing any deficiencies; her eyes are fine, hearing is fine. She will likely need physical therapy as she gets older to help her range of motion, as she has stopped being able to raise or turn her head due to the weight of the tumor.

Otherwise, we're doing well. Chris will sleep at home tonight, since there is nowhere for both of us to be comfortable. The plan is to switch off every few nights, but I am not sure I can sleep at home with her in the hospital.

Happy New Year to everyone! Thank you for all of your support, comments and prayers over the last two weeks. We have had more than 85,000 views since the blog was started, so we know you are out there, and Scarlett is feeling the love!

30 comments:

Reading everything in this blog and watching for every new post (subscribed in RSS). Many, many prayers for this very special little girl. Your family is doing an amazing job through all of this! Many blessings for 2011.

i hope the new year brings many blessings and healing for your family. i will think and pray for you often. you have such a sweet little girl and i hope she continues to fight. i cant wait to hear good news from surgery

Some one in my birth group had please pray for Scarlett in there siggy so I came to see what needed prayer and I am amazed by your strength!! I am praying with everything in me that she will beat this and you will bring her home!! I would not want to leave her either I could not imagine being either one of you and being at home waiting for the phone to ring because something has happened!! Be Strong and Know people are Praying with all there might for you Itty Bitty Fighter!!

Hi again, im following every day.. just waiting for any new updates. Praying for Scarlett,you and Chris you just be sure to hang in there and be strong. She's so lucky to have you and Chris as her parents. I'll be posting again later. STAY STRONG.

My prayers our with you and your family as you start a long journey. My six year old was diagnosed with a brain tumor on his birthday in April. I know how hard it is to battle the terrifying and unknown though I can't imagine having to do it with one so young. His docs are also at LPCH and are AMAZING! I will continue to follow your story and add to the many prayers going up for your little girl.

Are there private rooms?? Can we help you get one. I know that TONS of us on facebook and BBC are ready and willing to give the money to make you all as comfortable as possible. PLEASE let us help you. Can we donate to the hospital directly in your alls name??

I am following your story closely. I am praying for your little girl and your family. May the new year bring you news of a wonderful miracle involving your daughter. She is lucky to have you for parents. You are in my prayers.BBC mommy - Jessica

i have been reading your blog everyday multiple times a day looking for updates. i have your daughter in my thoughts as well as you both brandi and chris. i have started sharing the blog with my boyfriend too. i have not let a day pass without checking on the blog and seeing how things are going. i hope for the best & it will be tough but you seem to have SOOO much strength as well as your gorgeous little girl. good luck with EVERYTHING and i will continue to check daily for updates on your precious butterfly.

bless her heart. I have been reading your blog for a little bit now, and I always be sure to read your updates. My heart breaks for your family. I hope Miss Scarlett and you all the best. I'll continue to pray for you all.

This year has brought you ups and downs. It has shown you joy, excitement, unconditional love, and despair. But know it's given you an option and hope. Next year will bring you the miracle you and the community reading your blog has been wishing for. We are praying for your little butterfly, and for your family.

Brandi, I am from the Oct birth club and have been reading your blog several times a day. My baby daughter is born just before Scarlett and I cannot begin to imagine the pain you and Chris feel. DH and I are praying hard for your little girl. I have also posted your story and link on my FB. May the prayers and well wishes around the world result in a miracle for baby Scarlett.

I am so very sorry you are going through this. I will pray for you and your ever beautiful Scarlett that this year brings her miracle and with it the answer to your better promise that she will be fixed and it will be as if it was never there. We take our children for granted so often we forget the struggles we could be facing and how easy we could loose them. We need to remember the moms and dads going through what you are and take our little ones for granted less. May you be blessed. My love goes to you and your beautiful girl.

My prayers are with Scarlett and your family. I pray that God gives the 3 of you strength to get through this, and I pray that she will recover quickly from the surgery. We have an AWESOME God that can do ANYTHING! Take care Momma, and stay strong :)

Just saw your blog through a post of Facebook my sister shared. You are in our prayers. Our family will be praying for you. My daughter is 3.5 and my son is 16 months and they love to pray for babies. We will pray for Scarlett. She seems aptly named...Scarlett is fiery and a fighter. She can make it through!

From BBC (July 2010). Have been reading your blog (and wrote a message to you on BBC)...I pray for your precious daughter everyday, and know that anything is possible. May you stay strong, and know your own strength is beautiful to see for those of us following you.

Hi i came across your blog, through one of my preemie friend's from BBC, just wanted to reach out and say i'm praying for your little scarlett,my son joshua was at children's hospital oakland for six months in the NICU, and they have the best dr's surgeons and nurses there, i know the hospital is old, but they really are a outstanding hospital with a great staff, i'm not sure if you've met sister janice the nun who goes around meeting all the families and praying for them but she was a great support while we were there.